awareneXs

Fragile X Syndrome is a genetic disorder. FXS is the most common inherited form of intellectual impairment & the number one known genetic cause of autism. I'm here to raise awareneXs and blog our story. For starters, it is my distinguished honor and privilege to introduce you to Hayden.

Clouds, May 2010

Clouds, May 2010: This picture was taken from the car window on Route 80 in NJ. The lines in the sky are obviously from planes, but the fact that they form an "x" caught my attention. And after I snapped the pic, I noticed the cloud to the left as it looks like a boy's face.

Saturday, February 28, 2015

First, Hayden earned another Random Act of Kindness Award for helping a classmate in the special ed room :)

Yeah. He's awesome.

The second one needs a little bit of explanation but here goes...

So, in our world many things are a measure of progress, including scribble. Which is exactly what the picture below probably looks like to most people. However on February 25th Hayden wrote the first three letters of his name, for the very first time. Although they do not appear to be in the correct order on the page, they actually ended up that way simply because he fit them wherever there was room. But he did appropriately write the "H" first & then the "a" & then the "y".

You have to see through some extra marks but if you look at the picture without staring too intently... notice the "H" is to the far right (it's sort of crooked)... the "a" is near the center (looks like a lowercase "e" in script, but he drew the round part & then deliberately added a line to the right of the circle)... & the "y" is on the left:

Here they are separated out, in the correct order:

That is hands-down the most amazing thing I have seen in a long time. Difficult for me to express my pride in words.

Third... (I have saved the best update for last...)

During today's progress meeting at school the teacher mentioned that one day just a couple of weeks ago, a buddy at school brought H something from another classroom. One of the aides or the teacher who was with Hayden at the time said, "Why don't you invite (the buddy) to see your classroom?"

Hayden is with Gen Ed peers too, but the context here was that he was walking back into the Special Ed room.

Well, as Hayden & his buddy entered the classroom H said very matter-of-fact (apparently): "Things are a little different in here."

The other child was more than fine with this, which is wonderfully amazing in itself, but what I'm talking about is the amount of incredibleness that is squished into that single statement... "Things are a little different in here"

... not to mention the maturity & appropriateness of what Hayden said... & the timing... & the fact that he is becoming self-aware enough to notice this... & most importantly... that he just wanted to help the other student understand.

I don't mind admitting that hearing this was the first time I nearly cried at a progress meeting. Welling eyes further encouraged by learning that Hayden's schedule is once again being refined, to increase his participation in the Gen Ed setting with same-age peers. Thanks to technology combined with Hayden's ever-improving speech, his academic progression is clearly evident. And socially I am beyond grateful for the kind, patient, & understanding kids... like his buddy who enjoyed the tour of Hayden's other classroom & is completely accepting of things being a little different in there.

Next week by the way is the National Fragile X Foundation's annual Advocacy Day. Constituents from around the country travel to Washington, DC & attend meetings with their Members of Congress. (I strongly encourage you to learn more.) Not that I ever need extra motivation to attend Advocacy Day to share our story with legislatures, along with many other awesome constituents from the fragile x community, but if I did... this not-so-little update on Hayden's progress would just about push me the rest of the way to Capitol Hill.

Wednesday, February 11, 2015

Many parents within the fragile x community have truly incredible blogs. Reading some of them is almost as compelling as watching a show you're hooked on, only they're not acting.

A couple of friends recently shared blog posts which stirred familiar thoughts in me. And furthermore, relatable challenges which have been on the forefront of my mind lately (funny how that happens).

Holly is a mom of two from Illinois, & here is her most recent update :)Cindi is also a mom of two & she is from Colorado. This is her latest blog post :)

While one is a present challenge & another is a recollection from the past, both experiences are insightful, educational, & brave. I would encourage anyone to read them. Their words help shape assumptions into understanding. I was going to discuss that it's no surprise how maintaining schedules & adhering to routine are definitely near the top of the list of priorities for most kids with fragile x syndrome. I have been working on this blog post on & off for a couple of weeks now (literally). Partly revising the draft because there are so many different points I wish to emphasize, & partly just a side effect of recent computer issues. But one thing rings predominantly true-- that many of the challenges we have, carry over to aspects of life that I wouldn't have expected them to. Most of the time the routine of the day is mutually comforting because we all know it works. But that being said, there is not any one approach that will always be successful for any one challenge. It may depend on the day, the hour, the mood, the environment... as with any person.

Possibly amplified with a child who has fragile x.

But after an occurrence from just last night, I have one incident in particular that I wish to share. This happened to someone we know-- for real, not in quotations-- but the family experienced a situation that COULD happen to any one of us. With respect to privacy I am not going to specify friend, relative, near, or far-- but I will say, it's a family with two children. The younger child is Hayden's age & has autism. The older sibling is in middle school & the situation is a bit more complicated, however, that child's challenges are manifested through some very difficult behaviors.

The older sibling had a behavior episode at home last night which involved screaming threats, throwing objects, & unfortunately everything in between. Even though both parents were present they were struggling to get the situation under control. They are not new to their neighborhood-- they have lived in their current home approximately nine years-- nor do they have any new neighbors. However, their perception is that people are more familiar with the fact that the younger sibling has autism.... many unaware of the older child's struggles.

So last night around 7- 7:30PM the family was startled by sudden, strong knocks at their door. A male voice exclaimed, "This is the police." The homeowners responded immediately & found two officers standing on their doorstep.

Dan & I have often admitted amongst ourselves that if anyone ever heard what goes on in our house when we are trying to trim Hayden's nails, one might suspect a murder scene. I don't believe we would ever be able to live in any type of building that has a shared wall (or walls) with others. And that's just nail trimming-- which by the way when we're done, is like an off-switch. H simply returns to a completely unphased state, immediately after the last clip of the clippers. I don't even want to help you imagine what it's like when he has a meltdown over something less controlled.

What ultimately happened with this family we know, is that someone down the street from them called for help because they suspected a domestic violence dispute-- this is as much as the police told them.

We should all be so lucky to live near at least one person who wouldn't ignore unusual signs or signs of a struggle. At the same time it's very difficult to be thankful for such neighbors during this type of instance-- who were hopefully just concerned & not disguising a noise complaint.

The officers were kind & understanding, but the humiliation & invasion of privacy during a vulnerable moment will leave its mark. The mom said the scene the officers walked into, was similar to something on a reality cop show-- one child reeling from their meltdown & the other running around in nothing but underwear, with two devastated & drained parents at arm's length.

But this is why I insist on talking about difficult subjects-- not only because sometimes we need to see both sides to gain a better understanding, but also because the only thing worse than our absolute toughest days would be feeling as if we're going through them alone.

Please keep the conversation going. And when appropriate please offer support, or even just an ear, to those who need it. A tad different hearing a knock at the door & seeing a friend on the other side.

Tuesday, January 20, 2015

It's time for me to preach again. Because here in our little fragile x world (& beyond) we've had some very exciting happenings...Through recent legislation as well as an (unrelated, albeit awesome) A-lister interview, we have a lot to smile about!

First, on December 19th, 2014 the most significant change in Federal law in decades-- to specifically benefit individuals with disabilities-- became a reality.

Second, on January 13th, 2015 Yahoo news released a very special interview which is already creating just the buzz the community was hoping for.

Part One of the awesomeness technically began nearly 8 years ago, when the National Down Syndrome Society initiated
efforts to help people with special needs save for
their future. Previously, these individuals would lose all SSI
(Supplemental Security Income), Medicaid, & other supports if they
accumulated as little as $2,000! It was an archaic law that was well
overdue for change-- & furthermore, it also created a disincentive
for individuals with special needs to work & be productive members
of society.

So long story short in December of 2014, the bill to
change all that overwhelmingly passed the House with a vote of 404-17.
(Again, nearly eight years in the making!) Our community crossed their
fingers & practically held their breath until the news broke that
the ABLE Act went on to pass the Senate with a vote of 76-16. (ABLE stands for Achieving a Better Life Experience.) At that point, premature to President Obama officially signing the bill into
law, we were already rejoicing in anticipation. Then on December 19th, 2014, countless communities around the nation received the news they had been working towards & praying for. People living with disabilities now have the right to save for their future... like every other American citizen.This
bill had rare bipartisan support from its inception, & as the CEO
of the NFXF said, this is also monumental as "one of the last & most
widely-supported bills to pass this session of Congress".

Through the incredible efforts of a CSN Co-Leader from NY, along with her husband/ NFXF Board Member (who also happens to work for Yahoo).... together they were
able to get the ball rolling on setting up a Yahoo News interview with THE Katie
Couric.

So one day last year, the idea became a reality at the FX Clinic at the
Institute for Basic Research (IBR) on Staten Island. Finally Katie Couric & her team-- or should I say the
fx community-- got their interview!

The very morning after the news feature was released, it drove so much traffic to the NFXF site that their
servers became overloaded. As I said in my fb post (for those who saw), this level of
coverage is not common in our community. And the most crucial take-away,
in my opinion, is near the end of the clip after discussing the
importance of the research & its critical relation to a whole host
of other disorders, Katie asks, "Why is there not more funding for fragile X?"

It takes less than ten minutes to watch the video & read the article, but it is rich with information. Please pass it on & encourage others to do the same!

-- I would just like to add that when I shared these exciting pieces of news with friends & family, I reiterated something very important... People say this is the best community that you would never wish to be a part of. But take it from someone who was initially very reluctant to get involved, that once you are, you realize it s simply unparalleled.

A loved one who graciously shared the information with their family & friends as well, sent me a beautiful reply. Here is a portion of that message: "Exciting developments indeed! We are all capable of implementing
change.
Nothing is more rewarding than giving voice to a cause, particularly
those involving children, then seeing the profound difference it makes
in the lives of others...Thank you for
sharing these landmark events. We, too, are amongst the greatest groups
you never want to be a part of: autism, Tourette’s Syndrome, bipolar
disorder and profound ADHD. Perhaps we will find a link with our family
history of fragile x.I have shared the information with family and friends. It takes a village and I am proud to be part of yours!"

Advocacy Day is an annual two-day event organized & hosted by the National Fragile X Foundation. This March will be my 4th
time participating.

Advocacy Day helps yield results like the passing of the ABLE Act.

Advocacy Day helps secure funding for the type of research discussed in the Katie Couric interview."We have to keep hope. Because without hope, what's the point." - Shari SilverPlease click here to learn more & register to join us for Advocacy Day 2015, on March 3rd & 4th. Anyone. Can. Join.

--

NJ Residents: Scholarships towards costs associated with Advocacy Day are available to you, courtesy
of the New Jersey Fragile X Community Support Group. If you'd like to be considered for a scholarship, please email CentralNJ@fragilex.org

Tuesday, December 30, 2014

One very awesome detail I failed to mention about the night of the 3rd Grade Winter Concertactually happened afterwords, during a chance conversation in the parking lot.

There's
a young boy in Hayden's grade-- from a different class-- who has
befriended him this year. I had been hearing about J & was finally
able to meet him on Halloween.

Side note, speaking of Halloween-- shame on me for not blogging
about Hayden's awesomeness in the school parade! And his UPS costume was the biggest hit! Complete with his hand truck of boxes... playfully addressed to all of his favorite
dudes from TV:

The Counting Cars box was purposely, prominently displayed at the top to satisfy Hayden's last-minute change of mind. You see, after his UPS "costume" was all set--(it's real, thanks to Aunt Dana who was able to get it from a friend & former coworker--) Hayden decided he wanted to be Danny instead (from Count's Kustoms).

It was then that I got the idea for Hayden to pretend to be shipping to Danny, & that might be a way to incorporate The Count into H's costume... without having to change his costume. I eventually thought why not just add boxes for all of his favorite guys from TV! Furthermore, the following week or so after Halloween, I emailed Count's Kustoms to share a couple of pics with them. They loved hearing about H's costume & sent him a whole bunch of stuff in the mail! T-shirt, keychains, magnets, tattoos, stickers... the works!

Awesome-est Halloween ever.

So anyway, as I was saying Halloween also allowed me a chance to meet H's new friend J. He is adorable & very sweet. Fast-forward a little more than a month later to the night of the 3rd Grade Winter Concert. We're in the parking lot heading back to the car after, & we see Hayden's new friend. Then I noticed who he was walking with & I recognized his mom! Both of us are volunteers on a local Foundation, but neither one of us realized who the other one was.

After a very funny reciprocal exchange of "I didn't know you were his Mom!" ... we were thrilled to have "met" & put the pieces together.

So it turns out that J's birthday was actually coming up. His party was scheduled in just a couple of weeks. The thing is... it is inexplicably important to help shape friendships with H's same-age peers & encourage his inclusion in activities-- particularly ones outside of school-- are immeasurably beneficial to Hayden's growth & development. All birthday parties are a great opportunity for Hayden in general, because he is very social by nature. But at this age there are also fewer of them. So needless-to-say we were SO EXCITED to get the invite-- especially with this one being a birthday party for his new buddy J.

There are some things I would have to think about ahead of time, though. For example, Hayden tends to eat at atypical times & his meals throughout the day are extremely important for helping to balance his mood (not to mention, getting medication in). But it turns out for this particular party, that wouldn't be all...

I took a closer look at the invite & saw the words: Laser Tag Party.

(Insert imaginary sound of Pac-Man dying.)

Try to imagine how a toddler might react to a dark room, with blinking & glowing lights, very loud sounds, & people who are wearing combat-style gear running around, while aiming dangerous-looking objects at one another. And try to imagine how you would explain to the toddler, that this is just for fun.

Now imagine that the toddler is the size of a 9 year old, has a tough time with transitions, needs to understand a beginning & an end, how long something will take, & has difficulty regulating sensory input. In other words, they have sensory processing disorder which could range from causing them to overreact, under-react, simply become fixated, or potentially not notice something at all. This also includes difficulty with food textures, by the way.

But never mind the refreshments menu, how would their brain interpret an environment such as laser tag? What behavior might the child exhibit if the environment was just too much? Not to mention how might other kids react to this behavior?

As parents to a very unique child our anxiety was certainly heightened over this one. We didn't know what to do. Bring him? Keep him home? Try to participate for just a portion of the party? Would that be rude? It was also about a half hour away which wasn't helping. Yes it's true for many children with special needs that the more you expose them to, the better their chances for enjoying different situations. But that being said it is equally crucial to approach such situations with close care & careful planning.

Otherwise it could be a complete disaster.

It just so happens that the local Foundation I volunteer with-- which J's mom is also a member of-- usually meets monthly. We had one more meeting coming up for 2014 & it was scheduled during the weeks in between the school concert & J's birthday party. Since I do not know his mom too-too well, I figured that I would just speak to her in person at the next meeting. This way I could explain a little bit about Hayden, & she could perhaps offer insight as far as how the party might be structured. Would it be play, food, & then more play? Or just an hour & a half of play & then food? Was it just laser tag or other activities too? We looked up the facility online & they offered a lot of choices.

That was it-- I was feeling better already-- I would just talk to her when I saw her. That seemed like the best approach & I felt good about it.

Well as luck would have it we got some bad weather & the next Foundation meeting was cancelled. Oddly, at this point, I just thought fuck it. I am going to bring Hayden to that party. He likes this kid, this kid likes my kid, & we liked that kid, too! Shouldn't that be enough? (Of course in the back of my mind I'm thinking what if this doesn't work out... what's worse... coming up with a polite lie to not bring Hayden or Hayden going to the party & potentially _____ ... who knows... it's like fill-in-the-blank. Really.)

I talked about it with my family & votes were tied for bringing him vs not bringing him. So much for that being helpful.

There is one other thing-- hard to explain, but important to mention-- about the lasers. They of course look like guns & are pointed at people the same way. When Hayden is feeling overwhelmed it may turn into being upset or angry or both. One of his unfortunate new habits when this happens involves not only curse words, but also putting his hands together & "appropriately" pointing his fingers to mimic a gun. This is usually accompanied by phrases which Hayden knows have something to do with guns, & what these weapons result in. (Let's just leave it at that.) But the last thing we need is Hayden misinterpreting a game of tag as people acting out in a mean way towards one another.

I could go on & on about this dilemma but in my heart I really just wanted to allow Hayden an opportunity to have fun with familiar kids. My fears remained present, but that's not what it came down to-- the socialization is. We waited until just a couple days beforehand, if that, to even tell Hayden about the party in the first place. This way he had some time to let it simmer, but not too much time that we would constantly have to explain when it was coming up.

Hayden was in a good mood when the day of the party arrived & he was so excited for it. Like I said the place was about a half hour away-- not so much because of the mileage but rather due to traveling on several county roads to get there. (We are near a major highway that runs east/west, but not north/south... so those directions sometimes take longer from where we are.) #country

Mind you we are driving through areas with a lot more land than homes & at about half way there when we came to a crossing, Hayden saw a parking lot a short distance away with a whole bunch of cars (it was just a church with a lower roof line). I remember he asked if that was the party-- I'm sure he was wondering where the heck we were going. You have to remember this is a kid from school, so I think Hayden expected we'd be in the car 5 - 10 minutes. I guess they chose this place because we don't really have a similar venue near us. (There are party facilities in the area-- we're not completely in the middle of nowhere-- but no laser tag.)

Hayden was one of the last to arrive at J's party but in this particular instance that was absolutely fine. From the moment he hurried into the party room-- seriously, he was so eager I think he was skipping-- I heard a bunch of kids greet him & I knew we made the right decision.

When it was time to start the laser tag they had to first write their names on little score cards (I didn't realize this at first). J very kindly & patiently went over to H & showed him where to write his name. Hayden proceeded to draw one of the most deliberate & controlled letter H's I have ever seen him make. It was his typical crooked-style & had an extra vertical line... but I'll tell ya right now I don't think I could have possibly been any more proud. I snuck right next to him for a second, told him he did a great job, & said I would plug in the rest (which I did, adding the a-y-d-e-n). J saw me do this, but I don't know that he thought anything of it.

So next up they would gather in the little area outside of the laser tag room where the kids get suited-up, & also instructed.

I waited in the observation room (with the window) with some of the other moms, & Dan went to make sure that H was ready to start. One of the instructors knew to kind of keep an eye on H-- as did J's dad-- so for the most part, he was in there without us for practically the entire first half of laser tag play. If you can make out the one adult & two kids in the pic below, H is the blurry kid-figure on the right (J to his left):

There was a break in between the two sessions & the kids had pizza, which was perfect. For round two some of the dads joined in as well-- H's father included, of course. After the games were done they took a group pic & I don't even know how to put into words how awesome this felt for this mama <3 (Hayden is bottom-left, green top:)

So aside from one tiny thing that happened right before ice cream cake was served, everything was basically perfect. We just had a little moment of (probably) overwhelming-ness catching up with H... & when J was taking a birthday picture with his parents & siblings... our son was sort of photobombing... but not exactly in a cute way. I think Hayden was sort of confused-- may have felt like his participation in the picture was expected of him-- the same way we encouraged him to not run away before the group shot was taken. Not sure. But J & his family were unbelievably cool about it. Could not have been nicer & more understanding.

It all ended well. Hayden didn't really touch his piece of cake, which was completely expected, but he moved it around a little with the fork :). That was still participating as far as I was concerned!

The last activity-- (very busy party--) was video games! At that point we were ready to exit, & so was H, but the birthday boy was beyond thrilled to receive extra tokens that Hayden would not be using. So it was all good!

I did end up getting a cute shot of the two of them :) I am trying to keep this somewhat anonymous so in lieu of actually sharing that photo, I will leave you with a description of an adorable kid, hands in his pockets, wearing a casual closed-mouth smile, standing in front of bright bluish-purple wall, with an enormous "Happy Birthday" sign above his head, & turned slightly towards my son who is standing right next to him.

Monday, December 8, 2014

This blog post has been brewing in my mind since I put my head on my pillow last Thursday evening, but sharing my update got delayed due to computer issues this weekend.

Anyway when I went back to review all of the pictures from the 3rd Grade Winter Concert, I came across one in particular which pretty much summed it up for me.

Two years ago was the first time H was in a school concert, as a first grader. He did well in music class but as soon as they rehearsed in the gym on the risers, his participation regressed. Not that he was necessarily singing along-- or mouthing the words for that matter (even though he knew the songs)-- but at least in music class he was happy & enthusiastic, & participating with some of the movements & a few select words or phrases.

Therefore that particular year they invited me for one the practice days, because we all knew if H joined the other kids it might only be without the big audience of the concert night. After all, the 1st Grade Spring Concert is actually combined with 2nd Grade so it would be a lot of people.

I remember arriving at the school for one of the rehearsals & the adorable ladies in the front office kindly hid me in a supply closet (for real), so H would not catch me through the window as the students were walking by.

Someone had clued me in to the fact that H had already gotten slightly upset & actually threw up a little bit. When the episode subsided, they gave him something to fidget with & he was a little better.

But long story short, sitting (not standing) on the end of the risers beside his Aide is as far as his participation went that day:

I was not complaining! I didn't even know if he would make it off the gym floor & I was very proud of him for being up there & facing the big room.

The night of the actual concert we somehow convinced him to get in the car & go to the school-- we said we were only stopping by to watch for a little bit & then we would come home. We were careful not to place any expectations on him. But once we were there, we had a little mini miracle & his Aide just sort of led him on the risers... let go of his hand... & he stood! Here he is clapping to a 2nd grader from the special ed program:

2014 was a little bit better-- as a 2nd grader, the concert would be similar to the year before with both combined grades again. Furthermore, 2nd graders actually go on first so less wait time was definitely making things look optimistic.

And he did it. He stood on the end closest to the exit (for both sets), but he was up there. And he was proud!

One of our main concerns for this year, despite his continued progress, was the timing. Even though the 3rd graders have their own concert, so from a crowd standpoint fewer people would be better, a 7:30 start time on a cold, Thursday night when it's pitch black outside-- not to mention only about an hour shy of when Hayden is usually in bed-- would not be working in our favor.

However, with his entourage of six (grandparents included) he was a little more motivated & up to the task. We came awfully close to a meltdown though, because he wanted to wear a tie at the last minute & I did not have one. We tried one of Dan's but it looked quite silly because we couldn't match anything up. So we left it on for a couple minutes to hopefully satisfy Hayden since he wasn't letting it go, & then finally (thank goodness) he agreed to remove it.

His arrival at school was ultimately perfect-- he skipped right in! Literally.

When they waited in the classroom before it started, though, it was evident he was getting sleepy. He also wore his "tired" throughout most of the concert.

BUT

He was up there-- (completely opposite the exit this year, too--) & he did his thing!

This picture does the rest of the writing for me. This right here is what progress looks like.

At the conclusion of the concert he hugged a couple of the kids near him... shook hands with the music teacher... got an arm around him from the Principal... & last but certainly not least, as students were exiting the building, there were at least a couple of them who stopped to tell Hayden that he did great.

Wednesday, December 3, 2014

We have discussed getting a dog for a couple years now because I do miss having one, & we've always felt he/she would be great for Hayden. But I was equally concerned about the expense & the extra work. We always had a dog growing up but Dan did not, & he certainly didn't want Hayden to grow up uncomfortable around dogs too. Then while I was pregnant with Hayden, my sister's dog Harlee lived with us for about a year-- that experience pretty much converted Dan to a dog lover.

Harlee was a big black lab with an even bigger personality (albeit a great one, most of the time :) ). The two things I remember most about her, was how she absolutely loved the water-- like a magnet to it-- & for better or worse, she was very food motivated. Jenna got her after college, & Harlee was still around up until Hayden was 5, but we're not sure that he truly remembers her except for us telling him & showing him pictures. Hayden was fine around Harlee even though she was no longer under our roof by the time he was born, but then again she was here before him & also developmentally he was not exactly "5".

The other reason why I'm not so sure Hayden actually remembers Harlee, is that I can't think of a single dog he hasn't been afraid of.

That aside, Hayden is also becoming increasingly aware of the growing developmental gap between himself & his same-age peers... & coupled with his age there are going to be a lot of changes in the recent years ahead. Now more than ever is an ideal time to help build his confidence, his sense of responsibility, but also curb some of that anxiety while preserving his sociability. That is something I would never want to be compromised by any of the aforementioned-- Hayden's engaging personality has always been one of his greatest strengths.

As everyone probably knows by now, a hound mix named Sammie officially joined our family about a week & a half ago. Our short journey to adopt her actually began with a different dog-- a chocolate lab puppy. We planned to file adoption applications with various rescue agencies, but this one light-eyed cappuccino-colored guy tugged at our hearts from the first picture. He was described as friendly & goofy but in need of basic training (not that he reminded me of anyone).

I don't even think a full day passed from the time we completed our application to the time it was approved-- with references & all. But after we inquired about the chocolate lab, we would have a week until our meet & greet with him. So in the interim we also inquired about two other dogs, both females who were fully trained & slightly older. However, one of them already had several families interested & I did not want to be third or fourth on a list. The other one would not be ready for adoption until after the new year (she was still out of state & undergoing treatment for something minor).

The day we met the chocolate lab we purposely arranged to get to the adoption center early, so there would be less people & fewer dogs... vs the day when we stopped there to fill out the application in the first place, & it was much more crowded & therefore entirely too overwhelming for Hayden.

But unfortunately the little lab who acted just like the puppy he was, was just too much for Hayden anyway. He would not go within several yards of that puppy. After speaking with the people at the adoption center who also witnessed Hayden's reaction, they asked us if we knew about Sammie.

Long story short, within the hour Sammie's foster arrived so we could meet her. The next thing I know Dan was picking up food, dog bowls, a bed... & I was writing a check.

From the moment that Hayden & Sammie met, he not only walked right up to her but calmly accepted her leash. Within minutes he started walking her through the store towards the exit! I still get choked up when I look at these pictures, & may not have believed it if I hadn't been there to see it with my own eyes.

They sat next to each other on the way home, & that was that.

So, a little background on Sammie...

They believe "Sammie Sweetie" (we dropped the middle name) was born in 2008. Based on her paperwork it appears her first home was in Georgia. Originally the rescue agency thought she was 5, going on 6 soon, but there was also a good 8-month discrepancy in her birth date between the papers from Georgia & NJ. After taking a closer look it appears she is already 6, because of the date she was supposedly spayed.

Sammie was probably with her first owner (in Georgia) for about four years, & it appears that person just didn't want her anymore-- nothing really negative was reported though. We do know after Sammie came to NJ, she was with a family who gave her up after having a baby. They claimed that Sammie growled at the infant, but the foster did not see a shred of bad behavior (nor did the rescue agency when Sammie was in their care). One thing they explained to us is that sometimes the owners will lie to get out of the adoption-- sad, but it happens.

I can tell you that Sammie has met Flora & Gabriele, & she was wonderful around both of them.

Anyway, after some grooming :) & then being examined by a vet, we were told there is no reason to doubt that she has many good years ahead of her. By then Hayden will be a teenager & better equipped to handle the next dog (when the time comes)-- probably a younger puppy who could be around through his adulthood. We also feel relieved that Sammie has a permanent home now to live out her years. The only thing the vet said on a scale of 1 to 6-- 6 being the most severe-- was that Sammie may have a heart murmur rated 1. They believe it's probably from her
teeth needing some attention, & the bacteria getting into her
system. They explained how to care for her to improve the condition of her back teeth, & quite honestly if that's the worst of it then I'm grateful.

Although, Hayden's reaction to her had me sold anyway. Even before he started walking Sammie around the store (telling everyone who stopped to pet her, "That's my dog" <3 )... he was practically begging... asking me over & over again to confirm that she was our dog & we were going to take her home... & then hugging me & thanking me... & then perseverating again for reassurance... & more hugging... (you get the idea)

She is such
a sweet lady & has many traits that remind me of my beloved Sugar
(our second dog from my childhood). With the exception of being
camel-colored & not black, nearly everything else about Sammie is
familiar-- from her disposition, to the white on her chest, to the
beauty mark on her tongue.

Like I said, it's only been about a week & a half but so far Sammie has made her way into our hearts about as quickly as she made her way into our home.

Thursday, November 20, 2014

Sunday afternoon H was quite lethargic & had a decreased appetite. By Monday evening the pediatrician diagnosed him with a parainfluenza virus, & thus began the first of three days of medicine horror. As grateful as I am for health insurance & access to doctors & medicine & so forth... I am not so grateful for the experience of administering anything to a child with sensory issues.

But with everyone's help we got through the week-- Dan took off on Monday, Pop Z came to the rescue on Tuesday, Pop Z came to the rescue on Wednesday, then Thursday it was Grandma Suzi's turn, & in the afternoon Dan's parents were scheduled to take over next. But then there was a water main break in the neighborhood & our water was shut off.

I had already taken off work for something on Wednesday, & another thing Thursday morning. So during my thing two appointment Thursday morning, I get a text message from my father (who was not with Hayden) that my mom & Hayden were on their way back to their house. Which, I would soon learn, was because we had no water.

After my thing two appointment I headed to work. I was a good half hour away & it took most of the drive for my brain to process everything that had happened this week, remind myself what day it was, where I needed to be next, & who was with Hayden.

Fast-forward hours later when it was time to leave the office, & I crossed my fingers that everything would be back to normal when I got home. But as I approached our neighborhood-- (the street off the main road has two outlets--) I saw that one side was still blocked off with cones. The men were still there working, though, so that was a good sign. And then I passed the guy who checks the water tower-- (don't ask me his official title, I have no idea--) & he confirmed they were in the process of turning the water back on. "Should be about another hour," he said. This was good news because Dan would be home with Hayden in less than two.

As I approached our front door I discovered a couple of boxes were delivered. I'm only mentioning because to add to the week we had, one of the boxes was already opened. Not like it-wasn't-sealed-well kind of opened, but more like someone-cut-the-tape kind of opened. I still have no idea what that was all about (& it's kind of creeping me out), but I communicated the issue to Amazon.

Shortly after that, I checked email. For four straight days I had been sending messages to the nurse & teacher with subject headers: "HC out ___day". Not that there is ever a good time to be sick, but this week was especially sigh-worthy. We were all set to start something new with H's schedule... part of our team-agreed approach to help him through the tough 3rd grade year he seems to be having. (A separate blog post, not right now.)

The point was to help him with the transition before the upcoming, choppy holiday week.

So much for that.

Anyway, there was a new reply to my "HC out Thursday" email, from his special ed teacher. She was sending more get well wishes & added, "we'll miss you this afternoon."

Apparently whatever she was referring to, was not part of my brain's weekly recap during that drive back to work earlier in the day. But after a few minutes of thinking about "this afternoon", I glanced over at the adorable turkey flyer on the front of the refrigerator.

It had been up there for about a week-- the flyer for the annual Thanksgiving Feast. This is the November tradition for all of the younger "classmen" at the elementary school, & one that Hayden always looks forward to. He has been participating in it since preschool, & still does, since he spends part of his day in a special ed setting with students from different grades. And long story short, this year-- partially to benefit Hayden, specifically-- a couple of the smaller special ed rooms were going to combine classes for their Feast. I mean yes, to benefit all, but it was changes to Hayden's curriculum this year which actually prompted the idea.

These little moments at school have such big benefits for him-- socially, emotionally, & developmentally. They're the perfect type of settings to help him shine.

I, however, had it in my head that the Feast was not until next week. My heart sank when I re-read the flyer, & recalled the words in her email "this afternoon". Hayden would be devastated if he realized he was missing their Feast. I quickly tore the flyer down & threw it out. Then I sent an email to the teacher asking that they try not to bring it up, what to say if Hayden is the one to bring it up, how to downplay the fact that he missed the Feast, & what to focus on instead.

Next year will be his last one before he moves on to the middle school. I'll start my prayers early that he isn't sick for any holiday. Ugh.

But before I complete this update, I do have some good news to share...

There is something we have been thinking about for a long time. Reasons including, but not limited to, the fact that I miss having a dog, we do not like that Hayden is usually afraid of them, & at the same time he often pretends to play with a dog-- so we know it's something he wants to be comfortable with.

We finally just recently completed the application process for dog adoption, & it was quickly approved! We feel it is an appropriate time now to introduce the idea to Hayden. I think the benefit to him would be tremendous-- for his confidence, for a sense of responsibility, & for companionship.

We are actually meeting our first prospective new family member on Saturday morning. We have also inquired about meeting more, but one of the dogs is currently out of state & will not be in the area until after the new year. Another one has two other families interested ahead of us. But the kind people at the rescue agency are researching other potential matches for us in the interim. We are optimistic & excited... I grew up with dogs & after Dan & I got married, my sister's Harlee lived with us for about a year. That was pre-Hayden, but Harlee was still around when H was younger-- she passed away shortly after Hayden's 5th birthday. We're not sure if he remembers her except from us talking about Harlee, but I do believe this is going to be great for him.

Hayden has already said he wants to call the dog Grover. We are trying to encourage him to wait until he meets him (OR HER) before settling on a name :)

About Me

Hayden is my supermodel-esque son who just happens to have a genetic disorder which affects his brain. There are two kinds of people in this world-- those who know what Fragile X Syndrome is, and those who do not. His milestones followed a timeline of sitting up when most kids crawl, crawling when most kids walk, & walking when most kids begin toilet training. At 17 months a blood test confirmed Fragile X Syndrome. He has learning difficulties, exhibits behavioral challenges, sensory issues, hyperactivity, and also... an unbelievable memory, a charismatic personality, and his most prominent feature is definitely his smile. This blog is 'awareneXs' (for awareness), spelled with an X, because that's what we want people to know.